Brain Tumour Research is working with the family of 13-year-old Lily Wythe who has been diagnosed with a fast-growing, inoperable, diffuse intrinsic pontine glioma (DIPG) brain tumour, to help raise awareness of her plight.

Lily, who lives near Southend, Essex, underwent radiotherapy treatment. The family was then told by doctors to go home and make memories as there was no further treatment available.

DIPG is the deadliest form of childhood cancer with an average survival prognosis of just eight to 12 months from diagnosis.

Lily’s mum, Diane, 40, who has been interviewed on BBC Look East, said: “It was utterly devastating for Martin and me when we heard the news about our beloved daughter, but we are not prepared to do what the doctors say and wait for the disease to progress.

“We were never told about the possibility of clinical trials or other treatments which could make Lily feel better. It is only through painstaking research that we have been able to identify a promising, experimental clinical trial being conducted at the Children’s Hospital in Seattle in the US.”

Diane and Martin have been overwhelmed by the response from friends, family and their local community who, through a wide range of different fundraisers, have so far raised more than £70,000 towards a target of £300,000 to fund medical treatment at Seattle Children’s Hospital. Find more information on Facebook at Lily’s battle with brain cancer.

As yet there are no chemotherapy drugs that have been universally proven to show benefit for DIPG patients. Funding for research into brain tumours needs to be increased to £35 million a year in order to prevent more families from being plunged into this nightmare.

Related reading:

• Lily’s story
• Media coverage in the Southend Standard
• What needs to happen to improve outcomes for brain tumour patients?

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